We are in our eighth year of living with Lewy. Hubby is still at home, and highly functional, all things considered.

Initially he fell down frequently -- often more than once a day. He takes a blood thinner and even slight bumps cause bruises -- he was one massive black-and-blue mark. I sometimes needed help getting him up off the floor. He had a walker but in his case it was utterly useless. When he fell it would go tumbling out from under him. After about 6 months his primary care provider authorized a wheel chair. I expected resistance because hubby resisted using the walker (who could blame him) but it turned out he liked the wheelchair. Finally he could scoot around the house without fear of falling. This was good for his spirits.

I began to observe closely the nature of his falls. It did not appear that he lost his balance or that his unsteady gait was to blame. Instead his legs and arms very suddenly refused to work. He couldn't stay upright and he couldn't grasp the walker. I described this to his behavioral neurologist who said it sounded like narcoleptic-type episodes, where his body suddenly fell asleep even though his mind was still awake. He prescribed a drug used for narcolepsy, Provigil.

Oh my goodness! This is our miracle drug! Instead of falling several times a day hubby now goes months without falling. The wheelchair is handy for outings that would require a lot of walking (museums, the fair, etc.), but because of stamina issues, not problems falling. He not only is back to walking, but he bowls with a senior league once a week!

I have had to appeal insurance decisions to deny coverage for this drug more than once, but have been successful, with the doctor's support.

I don't mean to suggest that this is the most common cause of falling among LBD patients, but it is definitely one possible cause, and it is a problem that can be addressed with medication. I'm not sure how widely known it is among doctors who don't specialize in treating LBD, so I think it worthwhile for caregivers to be aware of it.

Does anyone else have a LO on Provigil? Was your experience as dramatic as ours?

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sun Jan 02, 2011 8:39 pm

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: We love provigil -- anybody else using it?

We tried it briefly many months ago ... and I felt it kept him awake and alert TOO MUCH. He never would relax and getting him to sleep was a problem. He also acted sort of drunk.

Of course, Provigil is a Boeve-favorite. I think it's his third-line treatment against hallucinations, and his first-line treatment against EDS (excessive daytime sleepiness). Few here have used it. If you are interested, you could do a search of past posts that use the term "Provigil" or "Nuvigil."

Sun Jan 02, 2011 10:36 pm

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: We love provigil -- anybody else using it?

Actually, Dale was on Nuvigil in January of 2010 because he had complained to the neurologist about being sleepy all the time.

I just looked at my journal and was reminded that he had called 911 during that time. A sheriff showed up at the door and Dale didn't remember making the call. It was a period of huge stress for me. I went to the dentist with what I thought was a tooth problem and was told it was just stress. There was nothing wrong with my teeth. All of it was coping with Dale's unusual 'alertness.' I was very glad when we discontinued the experiment.

A thought, Jeanne, occurred to me.... Each case of LBD is so different. Dale was only diagnosed in August 2009 and he is now failing badly. He has great difficulty standing and walking. He is constantly delusional. He thinks I am two people.

I see cases like your husband - diagnosed so long ago - and I wonder, what did we miss seeing in Dale's case? He experienced dizziness for a few years and he had been a sleep walker - but it wasn't until early 2009 that extreme delusional behavior began along with hallucinations.

It's no wonder that different cases respond to medicines differently. Each case seems to be unique.

Robin, I don't know what Dr. Boeve's favorites are -- I only know what he prescribes for my husband. I can tell you that provigil is definitely a JeanneG favorite! Falling was a very serious problem for us pre-provigil, and it is not a problem now. Boeve and Coy's sleep disorder doctor consulted on this and it is actually the sleep doctor who prescribed it.

I think the explanation, as I understood it, was very interesting. Coy has been treated for RBD for many years. That is a condition in which characteristics of wakefulness invade sleep. The sleeper acts out his or her dreams, which shouldn't occur in normal sleep. The theory is that perhaps in LBD characteristics of sleep invade wakefulness. The lines between sleep and awake have been disrupted for many years. Perhaps the disruption has now taken a further twist. It certainly looked like Coy was falling asleep in the middle of taking a step, even though he continued to be awake.

I don't know exactly why it works. But it works extremely well for Coy, and has for several years. I'm sure it is not the right drug for everyone with LBD, but I would hate to have to give it up for Coy.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Mon Jan 03, 2011 12:26 am

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: We love provigil -- anybody else using it?

Leone, I don't think you missed seeing anything. Each case does indeed seem to follow its own course.

When new people join my local support group, they almost always ask how long/how fast the disease progresses. But within our own group experience we've seen LOs die after two to three years, and LOs still functioning after 7 or 8 years. Who can predict how long any given case is going to take or exactly which of the symptoms are going to predominate?

We have been very lucky (if you can call anyone with LBD lucky). That you have been less lucky is not in any way your fault or because you missed seeing something. I hope you take comfort in knowing you are doing the very best you can at an exceedingly difficult task.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Mon Jan 03, 2011 12:40 am

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: We love provigil -- anybody else using it?

Thanks, Jeanne, for your reassuring words. Actually, we did feel very lucky for the period between the diagnosis in August 09 and just about six weeks ago. Dale and I traveled (Italy, Canada, Boston, California, etc.) and his condition seemed well controlled with Sinemet and Seroquel. Dale fell only a couple of times during that period. He didn't need a cane or walker though we took walking poles on our trip to Pompeii. I was warned that he probably couldn't navigate the cobble stones but he did and that trip was a major success.

With his recent return to delusions and hallucinations, we have taken him off Sinemet and that probably caused the physical problems. However, he does not want the delusions and hallucinations so he is absolutely opposed to going back to Sinemet. I've suggest it several times. He is very much aware of his condition and can be objective about it - which I understand is unusual. He once had a very creative business mind. This is all very tragic.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum